Med advice...to med or not to med... that is the question

I think it kinda depends on your "kind" of crohns.
It depends on how severe it is. You know your body.
I think you need to do whatever it takes to be there for your daughter (to be her advocate here) and if that means taking meds then that is what you need to do.
See what the alternatives are.

There are certainly other meds and other preperations of the med that you are currently on.

The only test I've had right now was a full blood panel that showed I had a high sed rate = inflamation. My last colonoscopy was in 2007 and showed active disease, but a pretty healthy gut otherwise, nice and pink, with only about 7 or so ulcers, mostly around my resection. I imagine it looks a little worse now.

My GI is planning for me to get a new colonoscopy probably in June or July.

Has anyone ever had a doc advocate that a CD paitent could take something PRN (as needed)?

June/July is a long time to wait - ack well, I suppose returning symptoms + high sed rate is probably sufficient enough indication to begin a new treatment regime.

Not me. And can't really think of a drug which would fit that bill. The trouble with Crohn's is that most drugs take quite a long time to kick in, anything from a few days/weeks to a few months depending on drug type. And then when they do kick in, you usually need to stay on them long-term for the symptoms to be kept at bay. Crohn's is tricky to treat, no doubt about it.

If diarrhoea is your main, or most troublesome symptom, you could always consider Immodium, Questran (needs to be prescribed), etc. Those really can be taken on a "as needed" basis and do definitely help some people. Others go down the probiotics, diet and supplements route, but that requires a bigger commitment than taking several pills a day, in my opinion... Still, it's certainly more natural.

Sorry I can't be of more help :-/

I look at Crohn's like a ticking time bomb, that can be slowly doing damage in there, not always with our knowledge. I've heard from enough people who said they were doing fine for years, without meds, and suddenly got very ill. Some needing emergency surgery. So yeah I stay on my meds. I went undiagnosed for many years myself, and was only on Immodium and Questran. I finally got diagnosed in the hospital after a major flare, that left me bleeding really badly. So I'm completely for staying on something to keep the inflammation from stirring in there. I've been on Asacol for years now, and tolerate it very well. It's worth it if it can help prevent something major from happening.

Oh goodness, those slaves to western medicine, how naive they are to be funding those pharmaceutical companies. Sorry, but I have heard this so many times and almost everytime the response has been the same. The person either needing emergency surgery or becoming extremely ill and unable to get their disease back under control with any of the available medications.

I once enjoyed a nearly 20 year remission, med free. Would I do it again, HECK NO!! Why?? Because while I had been busy getting on with my life, Crohns was still in there doing its damage on a microscopic level without me even knowing it. I had years where I had inflammation occur then heal repeatedly all unbeknownst to me, until I was completely obstructed and one day woke up in the worst pain of my life. That ended with an emergency resection that was quite painful and traumatic to me. Then I had a GI (now fired) tell me, oh since you have had a resection you no longer need meds, so I didn't take them again. What happened??? Only 3 years later I had to have another resection.

I now take my meds religiously and after battling for years of fighting to get my disease back under control, I can say I am now in remission again. Hope you remember you do have a chronic and incurable disease and just like someone who has diabetes, you must treat your disease at all times.

Good luck!

Hi I have had two resections in 30yrs the first one was 16 years ago (I had been on meds beforehand )had a right hemicolectomy after this surgery i bounced back within weeks. I then got the attitude that i didn't need meds again because i was so well and felt like i would be popping pills for something that wasn't there.
I went for 15 years in remmision with no symptoms, but in sept 08 had a bad flare with awful consequences, had to have 4 small srictures removed from the small bowel, a fistula came through my stomach and I ended up with a temporary stoma I was devestated and really regretful for not taking meds I still feel very guilty for putting my family through all this, when it could of been avoided or may not of turned out as bad as it was if i had taken meds. I urge you to seriously think about the concequences of what could happen not only to you but also what you will be putting your family through good luck hopefully there isa med that will agree with you. Bev x

I would say it's bidding against the odds.

Without meds, you will almost certainly get problems. Severe ones.

With them, you may still have problems. Usually less severe ones (I still got a ressection while on meds, but NOT emergency). Counting the side effects.

Or you can try these diets (SCD or Makers or ...) and see... many ppl are lucky with them. 

I am new to crohns so I cannot give you the advise of someone who had been battling it forever however I had slow simmering symptoms over 8 years before being diagnosed. Some cramping, multiple BM and occasional flares that consisted of pain like I have never felt all night long, vomiting, and cold sweats to be followed by diarrhea in the morning when everything would resolve. Had about 6 of these. My GP at the time still chalked it up to IBS because if it was crohns I would be in his words 'much sicker'. well come to find out it was crohns. I feel that I was so lucky that when I did finally see a GI for unresolved intestinal pain that there was not major damage done to my colon. Other than the inflammation the GI said it looked really good. I am extremly lucky that I have a mild case of it and it was not doing that much damage. I would strongly urge anyone to take meds for this. I am also a firm believe in holistic medication along with the med but I am a believer in traditional medicine.

Okay, okay....so scientifically, the odds are against me; and knowing that I'm at least doing what is in my control to try to avoid something potentially awful, does make a lot more sense than to just sit back and hope for the best. 

Thanks everyone for your stories and advice. 

It really helps to know you all are out there succeeding at life despite this terrible disease.  You have all inspired me to look at meds as a helping hand up to freedom, rather than a symbol of never-ending bad health. 

I promise to do my best to take care of myself, that way, when one of you need the support, I will be in good enough shape to be here for you. 

THANKS!

Laura

Why would you gamble with your health like that by not following any doctor's advice? I know that there are some bad G.I. docs out there but the fact that you can't find one doctor to go along with you may be the first clue that you are not going in the right direction. I am as liberal thinking as you will find but honestly I have seen this scenerio so many times without one success story. Nobody likes to take all of the medication and the fact that you are not in remission should tell you that it is time to move up to a more aggressive medication. There is always damage being done when your disease is not being treated despite the fact that you may be feeling great and blood tests are good. The damage can be in the form of scar tissue, fistula, narrowing from inflammation, or a whole number of things that can suddenly throw you into a scenerio that will require surgery or hospitalization. If you do not believe that this disease can kill you if not treated, let me share with you the story of an uncle of mine that was not able to have treatment for his crohn's disease. He was a homeless individual that disappeared for a number of years due to mental issues but we would hear from him every 10 or so years. He would never accept help and thought that he did not need help with his disease until it was too late. He was in so much pain and could not afford insurance and would not come to us for help. His desperation led him to go into a walmart and intentionally get caught shoplifting so that he could get medical help in jail. By the time they started to help him it was too late and too much damage had occurred. He passed away 2 days after being jailed and the autopsy showed a severly perforated bowel and diseased G.I. tract from Crohn's disease.
We did not know that he had Crohn's disease due to the fact that he was never around and chose not to ask for help. He had mental issues that caused to to go to jail many times and during those times they would tell him that he needed to be on medication but he thought it was a conspiracy. We learned of his death shortly after I had been diagnosed and it was an eye opening moment for me to realize that you can die from this disease if you don't take care of yourself. It taught me to trust the doctors and people who have studied for years and make sure that I followed what they told me. If you do not have that same trust with your doctor, then you may need to find a new doctor. The fact that you have already had a bowel resection should tell you what happens when your disease is left untreated. Do not get anesthetized by the fact that you have not had any major problems for a few years. This is a recipe for disaster. You have to be your strongest advocate, but make sure that you love yourself enough to give yourself the best treatment out there. One last thing, I receive my remicade every 4 weeks and the biologics are not as bad as you may think. I would recommend them anyday and am surprised that you have been able to go this long with this disease without being on them. There are still side effects but realize that all of the side effects that you read here on on the web are not going to happen to you. For legal reasons they have to list every possible side effect or problem that anyone using the medication has ever had.